Monday, September 27, 2010

Why learning about cool people with brain tumors makes me feel so much better about mine ...

I took a vacation.


Although I have traveled quite a bit in recent years (on business, to see my long distance boyfriend(s), to visit friends, etc.), I haven't had a proper vacation since 2004.

I really needed this vacation. Five days on sea and in Mexico. It was glorious. I mean, it was a really, really good time.

I went with my friend Emily.

I laid out on the beach and didn't want to leave.

I drank copious amounts of booze.

I sweated. A lot.

We got sunburned.

I watched my worries float away. At least for a moment.

It was over way too quickly.

I used all my vacation time, which in hindsight is probably stupid considering I will have to take unpaid leave after surgery. But I don't care. I needed this vacation - it very well could be my last.

I know, I know ... that's so macabre.


But vacation isn't the subject of today's blog.

Last night, whilst surfing the Internets, I came across something that turned my frown upside down. That's such a grandma phrase and really, I wasn't frowning at all.

One of my favorite actors, and definitely one I crush on from time to time, also had an acoustic neuroma. Get ready for it ...

SEXY ASS MARK RUFFOLO had surgery for his AN back in 2002 and suffered serious facial paralysis. Which he later overcame 99% of it.

I think you can sorta see the bottom left of his lip is still a little dangly and super cute. If I have sexy, cute, adorable, hangy paralysis lip like Mark Ruffolo after my surgery I will be chuffed.

Chuffed = British slang for pleased, satisfied, etc.

Is it just me, or is Mark Ruffolo the cutest actor on the planet?

Upon researching Mark and his tumor, I found this guy:

Adorable, Hilarious, Funny Tumor Guy Who Wanted To Call Mark Ruffalo

I might write to this guy. His tumor is different than mine, but nevertheless, he seems funny.

Hey, it just struck me that humor rhymes with tumor. I should write a rap. I will write a rap. A humorous tumorous rap.

My surgery consult is on November 1. They (not really sure how to define who "they" is) say that surgery is scheduled VERY soon after your surgery consult, so I'm thinking that my surg will be in early November. There is so much to get done.

1. Finish my living will. (This is very sad for me - and I will surely blog about it.)
2. Clean my office and write several schedules and to do lists for while I am recovering, or in case I die. (This is a huge project.)
3. De-hoard. Meaning, clean and organize my whole house so I can recover comfortably.
4. Figure out how I am going to live financially during recovery. I might have to hook this month in order to build up a nest egg so my son can eat and I can have cable and Internets - oh, and a roof over our heads.
5. Write letters and journal for my little boy. In case I die.
6. Seek therapy for this little issue I am having regarding death.
7. Love on my son as much as possible.
8. Get a bitchin' haircut that will include shaving the left side of my head in a fashionable manner.
9. Call all my creditors, utilities, etc., to see if I can get extensions and forgiveness on bills I will owe during recovery time.
10. Have copious amounts of sex. Just kidding. Although I wish I weren't.

That's all for now.

Wednesday, September 15, 2010

Love, Schwannomas and French Accents

First of all, I want to thank each of you who read, commented, texted, e-mailed, sent candy bouquets, etc.! You have NO IDEA how much your love and support means to me. It means the world. And having you in my life makes this journey so much more tolerable. Thank you.

Incidentally, I really didn't receive a candy bouquet. But that would be rad if I were to receive one soon. ;-)

My work colleague, Mary (AKA the best, most amazingly wonderful communications assistant on the planet), sent me a news story with this note attached to it:

My dearest, lovely, coolest, smartest, most beautiful woman in the world, Joey:
It'd be pretty freakin' awes if you came out of surgery with a normal looking face & a sweet accent ... just sayin!

That made me giggle.

Incidentally, I made up that salutation, but I know Mary really believes all those things.

I thought about changing the name of my blog today to My My My My Schwannoma. I still might. But first I Googled it to see if anyone else has used the name.

I didn't find a blog with the same name, but I did find this brilliant masterpiece.

That video led me to this video about a girl with an addiction claiming that she'd be better off with a brain tumor. Wow, that really pissed off a lot of people with brain tumors.

Incidentally, I am tracking how many times I use the word "incidentally."

This blog post is really random today.

I got some sleep last night - asleep before midnight, which is early for me. Thus, today I haven't had one headache, but I've been incredibly dizzy. I think it's because I was sniffing Sharpies earlier this morning.

Incidentally, that was a joke.

I am going to stop writing now before I bore myself to tears.

I'll be more clever tomorrow.

Ancora Imparo!

Tuesday, September 14, 2010

Ancora Imparo

Several years ago after breaking up with my baby daddy, my aunt Julie told me about the phrase Ancora Imparo. She'd read it in a book. It is said that when Michelangelo Buonarroti was on his death bed he said, "Ancora Imparo," which means, I'm still learning - or some variation thereof. The phrase has stuck with me. I've used it. I believe it.

Over the past five years I've learned a lot. About myself. About people. About life. And yet, I am still learning.

I've been going about my business, meeting and enjoying new friends, loving and watching my son grow up, working, enjoying life, being horrible to my body. And yet, I am still learning.

I learned something new recently. Something that would shake me to the core. Something that would bring tears to my eyes in an instance. And yet, I am still learning.

Once I heard Johnny Carson say that you can only use a joke or anecdote three times before it gets stale and no longer funny, so I will stop with the ancora imparo shit. Just know that I believe and live it.

On September 1, nearly two weeks ago, I had an appointment with an otolaryngologist. They checked my hearing, which has been failing in my left ear since earlier this year. The patterns were "unusual," and so I then began a battery of tests, including a CT scan and an MRI.

When it was all over I was diagnosed with an Acoustic Neuroma — a tumor that hangs out on the eighth cranial nerve. Yep ... a brain tumor. It's also called a vestibular schwannoma. I might change my blog name to My My My My Schwannoma and then write alternative lyrics to The Knack's brilliant song, My Sharona.

Here is a picture of my tumor. This is from a "slice" of the MRI and shows my head and brain and insides from the bottom of my face up - so it's like the photo is taken from under my face looking up. Oh, so confusing. The tumor is on the left side, but in the photo you see it on the right side. It looks like a little candy corn. It very well might be a candy corn from years past. I've been pretty drunk at several Halloween parties in previous years so who knows what could have happened.

One of my best friends pointed out that in the top right of the shot, near the top of what I think is my left eye socket (remember, it'll be on our right in the photo), there is a sideways image of Jesus. But then we both agreed that it's not Jesus at all, but rather, it's 70s Eric Clapton.

I digress.

So, for two weeks I have been spazzing out, crying, whining, worrying, and basically freaking out.

The doc says I have to have BRAIN SURGERY!!!!!! See, I'm freaking out.

Here's the good news ... although Acoustic Neuromas are VERY rare (1 in 100,000 people are diagnosed every year in the U.S.), the prognosis is good. It's NOT cancer, it's a benign tumor. Treatment IS available. And the best news of all, I have an amazing support system. Seriously, AMAZING!

So, what's the bad news? Well, aside from my symptoms, which should have all added up way before now (dizziness, falling down a lot, headaches and the hearing problems), there are lots of scary things that make me nervous.

I'll break it down in list format:

1. I am a chicken. I hate the thought of having my skull cut open and my delicate brain and insides poked and cut. The scar will be wicked! I might get a tattoo on my skull.

Here is a photo of a chick's head who had the exact same surgery as I will have:

(Here is a positive ... the doctors take a chunk of fat from my tummy to close up the wound on my head. Win!)

2. I am scared of dying. I've always been scared of death. My death, people I love dying, people I don't know dying. I am just scared of it. My mom thinks it is because I don't have faith in God. She's wrong. I just don't like it.

I'm scared to leave my son with his father, who has proven to be an alcoholic. But that's another blog post, and perhaps another blog all together.

3. Work. I love work. I don't want to have to be off work for a long time. I can't be off work for a long time. I have three weeks. Yes, three weeks of paid leave. I may have four by the time surgery rolls around. But as of right now I have three weeks. Hopefully my employers will let me telecommute and work from home. Because I have lots of work to do and because I don't want a loss of income.

$. Which brings me to loss of income. Shit! Although I don't live frugally, I do live pay check to pay check usually. And I am just talking about my day to day living expenses. How much does brain surgery cost anyway? My insurance pays 80%. So, I will be paying 20%. Ouch! Between student loans and brain surgery costs, I will be paying out my ass for the rest of my life. Which they (people who want my money) could literally take it out of my ass and I wouldn't mind, much like the doctors do when closing up the wound in my head. Close up my debt with my ass fat, you jerks! That would be a total win.

I digress. Again.

5. Facial paralysis. Yes, chances are that after I have surgery I will have some facial paralysis. GD, my face and my brain are my two best assets and they are both in jeopardy right now. All I can say is FUCK!

I'm sure in the weeks ahead I will have much more to say. I am sure I will even repeat myself frequently. I mean, I have a brain tumor after all, my memory surely is affected.

Here's the thing ... in the past I have always written during times of trouble in my life. It's always helped. This will prove to be no different.

And I want to provide a positive, humorous look at this journey for people like me who are finding out they are in the same boat. I google Acoustic Neuroma and 90% of the people talking about it are negative. I have to be a positive force.

I am allowing myself about another week to fully sack up and start dealing with this. I have to. I am a positive person by nature and I have a son to live for, friends to annoy and a magazine to publish. I can't be a quitter and I can't die.

I hope you will join me on this journey. As my friend, JP, says, "This is just a bump in the road." Fingers crossed that she is right.

Here are some interesting links I found:

Here is a mom blogging about her daughter's AN surgery. It's a fun read. However, I would be pissed if my mom left the hospital as often as this one does - off enjoying yummy polish food and painting the town. I'm selfish and mean like that. I'm also an exaggerator.

Blog about an AN chick like me. Well, not just like me, but we both have (had) ANs.

Here is another blog of a woman's account. It's good for me to read these, I think. I know everyone's situation is different.

Deb's AN Adventure

This guy just cracks me up ... and his facial paralysis doesn't seem to be horrible, like I am expecting mine to be.

Funny facial neuroma guy.

And finally, I forgot to mention that my brain tumor is 9mm x 4mm which is big enough for the doctors to want to remove rather than watch and wait.

The next blog topic might be titled, "How will I ever find a husband with a pirate patch and facial paralysis."

Until then ... thanks for reading.